FAMILY SUPPORT GROUPS

FAMILY SUPPORT GROUPS
TITLE	DESCRIPTION
Alliance of Genetic Support Groups	A national coalition of consumers, professionals and genetic support groups to voice the common concerns of children, adults and families living with, and at risk for, genetic conditions. This web site contains membership information and a searchable member directory, useful resources, newsletters and other publications.
American Heart Association	Provides information on heart disease in children, including congenital heart defects. This site has an "ask the Pediatric Cardiologist" section, as well as links to other sites.
Children's Heart Association for Support and Education (CHASE)	Affiliated with Toronto's Hospital for Sick Children, this site offers a wealth of information including quick facts and definitions of congenital heart defects, personal stories by diagnosis, and links to more information on syndromes, heart transplants and financial support for the families.
Congenital Heart Defects	This link provides a user friendly clearinghouse of information to the worldwide congenital heart defect (CHD) community. The site has a broad spectrum of information for families, ranging from infants with newly identified congenital heart defects, possible surgeries, coping after surgery and dealing with the loss of a child.
Congenital Heart Disease (CHD) Online Handbook	This site provides information on diagnosis testing, surgery and medications used to treat congenital heart defects. Also, included is a section on issues of concerns to adults with CHD.
Heart to Heart Fund	This site provides a collection of useful resources for families of children with congenital heart disease including links to support groups, supporting organizations and a list of additional informational sites on the web.
Our Kids	This web site is designed to provide information and support for caregivers and family members and others who work with special needs children. Sections include organizational information, support staff, and caregiver resources.
Pedi Heart	This web site has a Kidzone for children with heart disease to learn about the heart and meet other kids and a Parents' Place for parents to learn and meet other parents, as well as an advanced information area for the Practitioner.
Special Child	This link is dedicated to providing support and information to parents and caregivers of special needs children. This site includes family issues, success stories, information and a caregiver tips section.
Spina Bifida Association of America	The Mission of the Spina Bifida Association of America is to promote the prevention of spina bifida and to enhance the lives of all affected. The web site contains organizational information and activities, spina bifida fact sheets, clinic and chapter directories, resources for the media, and research and educational updates.
Sibley Heart Center	The Sibley Heart Center web site has materials on common cardiac diagnoses and procedures.
Texas Heart Institute	This site from Texas Medical Center lists conditions that increase a child's risk of being born with a heart defect, has patient care information, a glossary and an anatomy of a heart.
The Congenital Heart Information Network	The goal of this site is to provide information and resources to families of children with congenital heart defects and acquired heart disease and adults with CHD, and the professionals who work with them. It has listings of support groups by states, regions and countries.